drain down, drain down.

we have a lot of updates, so this is a very newsy post. i feel like a reporter.

3 weeks out of surgery, i got another fill up of the expander (kind of like a gas tank. fill ‘er up!). the needle slightly hurt going in today. maybe a sign i’m getting some nerves back. and, i finally got rid of my second drain. it’s a weight lifted, literally. i lost a little over 2 pounds, which doesn’t sound like a lot, but when it’s 2 pounds swinging from a tube coming out of your torso, it feels damn good. my fluid output wasn’t technically low enough (needs to be below 30 each day, and it was hovering around 35 the past few days), but my surgeon really wanted it gone. so we have to continue watching for oozing and infection, and to be careful with the hole that remains in my torso (although the surgeon said, “oh, that should close up pretty quickly.” note to self: the body is still an amazing thing, even if i was mad at mine much of the last 7 months) (also, for any readers who may have to get drains in the future, the fluid output and emptying the drains 2x/day is gross, but not as gross as anticipated. probably more annoying than anything to pin them to your clothes and figure out a good sleep position and hide them from the public eye under puffy vests. the output is an orangish clear liquid, and they provide you with a cup to dump it into and measure, before disposing of it. the doctor keeps gauze over the hole where the tube comes out too, so it’s not too sci-fi to see it directly exiting your body.). mike laughed while watching the doctor pull out the drain tube – he said it was like a magic trick where the magician keeps pulling scarves out of the hat and the scarves just keep going. ew.
and in other ‘ew’ news, i get to shower tomorrow. sponge baths are sure getting old. man, the feeling of hot water hitting my head and shoulders is going to be amazing. if there was a doubt california was in a drought, it’s going to be 100% certain after my shower tomorrow.

we also checked in on my ovaries this week. and they are looking a-ok. incredible even. although that last description, when coming from the male fertility doctor, really bothers mike. especially when said during a vaginal ultrasound. there are some good signs (follicles? cells? hormone levels? dunno.) i’ll get ovarian function back, and now the long-term question is how much will come back (like, will just one ovary work? will it only work 33% of the time?). my oncologist and fertility doctor both agreed that i won’t need ovarian suppression. this is based on the tiny amount of invasive cancer i had left at surgery. i’m very happy about this. cheers to avoiding monthly shots and more side effects that take away my estrogen, a hormone which helps all sorts of things like joint lubrication and memory and being aliveness but is a delectable treat for my cancer cells! joking aside, my oncologist takes the most aggressive approach to everything, so if there’s even a slim chance it would help, she’d sign me up. onward, dear ovaries.

the last piece of good news we got was from my radiation oncologist. it’s good news but confusing news. she was so excited about my surgical pathology and the positive treatment response that now she’s uncertain radiation is necessary. she concluded that most radiation oncologists would recommend it, given my young age and to take an aggressive approach. so she will too. but it stumped her, like no-pope-black-smoke stumping. well, stumped her and excited her. it is good news, yes, but as it’s set in, i’m confused too and have started a list of questions for her. no one wants to be the guinea pig and not do the radiation, so we don’t really have statistics to fall back on for the alternative.

in a way that was similar to the mastectomy versus lumpectomy turmoil, i have to think in hypotheticals: if i have a metastasis in 5 years, would i look back and think i should have done the radiation? maybe it will be overkill. but, maybe it will complicate and cause my breast reconstruction to fail leaving me with a concave side. call me shallow but no one wants that. i get mad at the imperfections here. and some moments (fleeting moments), get lulled back into this false complacency that i’m fine now, cancer free, no chance of anything bad ever happening ever again in life, all stocked up on shitty things thankyouverymuch! that whole “i’m invincible” and “i’m young and healthy and resilient” and “maybe i never even had cancer to begin with” kind of thinking. frankly, it’s a defense mechanism for making it through the day and not being absolutely overwhelmed that there are a ZILLION things that could go wrong every moment of every day. but if we really fully recognized and processed this fact, we wouldn’t come out of under the bed (or in SF, we probably wouldn’t go under the bed but somewhere else safe from earthquakes). jeez. i’ll keep working this through with my care team.

even though i’m not working this month, our calendars are full. i started physical therapy last week to get range of motion and strength back in my arm. i’m at 150 degrees with a goal to be at 180. they are making sure my chest doesn’t fully curve into itself after surgery, and taught me how to drain my arm since removing lymph nodes took a lot of that natural drainage away. julie wong is the PT person, a breast cancer survivor herself. she had a change of career after diagnosis when she realized there were so few resources to help women get back to their quality of life. i’m fascinated by how pressure on various points of the body can help so much. they massage my gut to reactivate the digestive tract after chemo/surgery; my pectoral muscle to shift it down on top of the expander; and my whole chest to help smooth out scarring. sounds intimate, but it all feels pretty normal. and super good.

the few days following PT though, i am exhausted. like exhausted in a bone tired way that i never really had during chemo. i can’t shake it either. it smacks me that maybe it’s all finally catching up, physically and emotionally. i wish my time off were spent on all these wonderful things i’ve always said, “if i had a month off, i would [insert fabulous adventure here].” but i’m not doing them because i’m just…tired.

my hair is starting to come in, as you can sort of tell in the picture (mike wanted to get fancy for the portrait). he thinks, from a distance, i still look bald, but up close, it’s a tie between an old man and a baby. he’s pretty accurate. with eyebrows and eyelashes making a reappearance, i’m starting to feel more human, less cancer patient.

my parents are settled back in Illinois now, and they were an extraordinary help. doing all kinds of odd jobs – beyond the laundry, dishes, and cooking, things like patching up holes in our house, sewing a christmas tree skirt, widdling us a coat rack from reclaimed fence wood. standard stuff, you know. kind of amazing when it all adds up. so thanks #1 mom and dad. whiz misses you too.

a lot of newsy bits. yadda yadda yadda.

i’ve been wondering when i get to say i’m cancer free. my care team hasn’t mentioned it yet and won’t, it seems (the fertility doctor and my nurse practitioner both said something like, “yeah, let’s see how this next year goes for you.” it was in reference to the kid thing, like maybe we’d get the green light if i don’t have a reoccurrence or metastasis in the next 2-3 years). i don’t think i have cancer any more. but who can truly say that? who knows if i have a cluster of cancer cells hanging out, or others just waiting to mutate? am i a cancer ‘survivor’ yet? i’ll be in active treatment for at least another 5-6 years, and possibly up to 10 if the long-term tamoxifen pill studies play out this way, but technically i’m alive so surviving…? there are no right answers, so like many things, the decision will be up to others but also up to me.

thanks for still being here and helping me work through it.


and ps, andrea, welcome home from the hospital!!!

This entry was posted in The story. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s